Tag Archives: essay

I’m sure many folks with EDS can relate to Sydney’s struggle with her typical pain from EDS.

There are days that Sydney Davis can’t move from her bed, because her entire body hurts. “It’s exhausting to take a shower,” she said.

Davis likes to stay active. She climbs mountains, she plays sports and she wants to be a physical therapist.

Many folks with EDS seem to live with this contradiction: being active and being in pain. Many of us have increasing pain as we age precisely because we were too active for too long while we were still able. Continue reading →

This is a wonderful essay linking the physical “disconnectedness” of EDS to a psychic feeling of disconnection from the self.

I have Ehlers-Danlos Syndrome, which means my body has bad glue.

My glue, an amorphous, drunk blob or cloud, playing tricks, getting things all wrong, incapable of indicating what is real. My genes, speaking to my body in the wrong language, refusing to bind me, utterly stupid in regards to what level of adhesion properly constructs a body. Continue reading →

In this essay, Ms. Zaikowski describes how the “bad glue” of EDS allows us to slip and slide not just in our bodies but through our lives. She connects this physical malady to our emotional and even the existential realms – a very different viewpoint.

I have Ehlers-Danlos Syndrome, which means my body has bad glue.

My glue, an amorphous, drunk blob or cloud, playing tricks, getting things all wrong, incapable of indicating what is real.

My genes, speaking to my body in the wrong language, refusing to bind me, utterly stupid in regards to what level of adhesion properly constructs a body. Continue reading →

Many people do not seem to understand chronic pain or just how extensive its effects are, how exhausting always being in pain is, how displacing and uncertain, nor how hard that pain makes it to concentrate and think.

I’m sickened by the tone of the anti-opioid lobby these days, which has become aggressively hostile to pain patients.

They present more propaganda than fact and attack pain patients who are legitimately taking opioids for chronic pain. They invent their own truths and blur the line between known facts and biased conjecture. Any dissent is met with hostility.

Their denigration of pain patients has reached a new low with their latest claim by A. Kolodny, leader of the anti-opioid organization, PROP:

“Anyone taking opioids regularly is addicted.”

Whether you are in pain or not is irrelevant, whether you are taking prescription medicine or scoring heroin on the street, whether you are conscientious hard worker, or living by crime, none of that makes any difference; if you take opioids you are an addict, they insist.Continue reading →

I cringe when I hear the awful propaganda statistic that “40% of opioid prescription opioid users go on to use heroin” with its horrible implications because this statement is almost criminally misleading.

It sounds truly awful, like anyone using opioids for pain relief has a 40% chance of getting addicted. But, wait a minute…

Literally millions of people have been given opioid pain medications after major painful surgeries, and 40% of those folks certainly do NOT go on to heroin. The vast majority of patients have no problem with ending their opioid use when their pain ends. Continue reading →

As a pain patient with over 20 years of successful opioid treatment experience, I’m offended by all these pain guidelines that assume I am stupid and lazy (if my pain is even real in the first place) and that my doctor is ignorant and negligent.

I’m insulted by all their extremely negative assumptions and appalled that they broadcast such a devastating stereotype of pain patients. Coming from the central government these guidelines stigmatize patients more powerfully than anything I’ve seen so far.

They paint pain patients as lying, lazy, ignorant, whining scammers, assuming the very worst of human motives and behavior. This reminds me of the psychological truth that we are generally most bothered by others when they reflect our own shortcomings. Continue reading →

I’ve been overcome by repeated crying jags for the last couple of days since the 15th of March (2016), when the CDC finally released its “revised and reviewed” final version of the Opioid Prescribing Guidelines. I should not have been so surprised that they were almost identical to those released about 6 months ago to so much opposition.

My initial shock and disappointment in my country, so callous and dismissive of our pain, has hardened into overwhelming disgust with the CDC, the influential recovery industry, and the media-manipulated pain-free public.

The news crippled me with grief the first day and overwhelmed me with repeated meltdowns of frustrated rage the next. Today, I’m just very sad, but finally calm enough to address what happened. Continue reading →

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